Friday, July 10, 2015

Summer Lovin'

It's been several months since my last blog (yikes) so a lot has happened! I'll have to do a few posts to catch up to what we've been up to. So far, we've had a good busy summer and we've gotten outside a lot and enjoyed the beautiful weather! 

Lily's cousin Hailey (Schaa) was born at the end of March so we have enjoyed getting to spend time with her and her mom and dad, especially mom while on maternity leave. Initially, Lily wasn't quite sure what to think of Hailey. All she did was sleep and eat. ;-) But now she is much more entertaining and fun to watch since she is awake more, making lots of noises, and moving around! I can tell these girls will be great buddies as they grow up together!

We had Easter with the Kramer side of the family this year! Lily got to hang out with all of her crazy cousins' on the Kramer side and did her first Easter egg hunt as well!     
  Our beautiful Easter Lily!

We had the opportunity to dedicate Lily to the Lord at the Steamboat Rock Baptist Church (where Levi and I both grew up.) We were so grateful to be able to do this and for the support our church and community has shown us through everything!

                                                                                               So many grandmas!


This girl loves to be outside and loves crafts! So here is the best of both worlds!! She is a farm girl at heart!


Sand art is the best! Gotta love Hobby Lobby :)

Kitties, kitties, kitties! This girl can't get enough of her kitties. She is a little partial to the orange kitties because of Mr. Mustard. And I'm pretty sure the little kitty is quite fond of Lily too. Probably because he doesn't get mauled by Lily like he does with the cousins :) 


As many of you know, Lily has had some trouble with reflux off and on. We tried numerous things to resolve it: feeding mix changes, changing the rate of her feed, medication changes, venting/not feeding feeds, positioning, etc. It happened off and on for months and she would have weeks without any problems, then some weeks where it was almost every day. It was to the point where it was clearly making her very uncomfortable when she would reflux and her feeding would come back out her gtube and at times out her mouth/nose. Horrible to watch and I felt terrible her having to go through that. In addition, the risk of Lily aspirating food into her lungs was very high due to her inability to swallow. Thus, we decided after much consideration and speaking with Dr. Schroth, (her pulmonologist) that it was best to try a gj tube (gastrojejunal time) that goes into her small intestine, rather than feeding her stomach. That would most likely resolve the reflux and prevent food from coming back up since it would be fed directly into the intestine. It was not what we wanted to do and not what seemed "normal" of course. But due to Lily's muscle weakness, inability to swallow, and high risk for aspiration (which could lead to more dangerous respiratory complications) we headed to Madison, Wisconsin for gj placement mid-May.

The actual gj placement went fairly well, considering Lily was not sedated and it was her first gj placement. However, things took a turn for the worst. We started feeds off slow and worked up overnight, which she tolerated perfectly. Then the morning after her procedure she started to vomit up large amounts of green bile, which you could tell was just so hard on her body and stressed us out because we had to make sure we were constantly coughing/suctioning/clearing her airway so it didn't settle in her lungs. Unforunately, for Lily the switch to the GJ made things worse for some reason, which was not to be expected at all. Lily's Dr. mentioned that she only knew a handful of kids that had not tolerated the switch from G-tube to GJ well. *Sigh* Apparently, Lily likes to march to the beat of her own drum. Not even 48 hours later, after the vomiting persisted, we made the decision to go back to a regular g-tube button.  We were nervous and we waited, but restarted up on feeds again slowly and Lily tolerated them very well. Hmmm. Crazy. And once we got her out of that hospital room and into her stroller, then into the truck, she was a new person. And (knock on wood) as wild and crazy as it seems, she has not had a single episode of reflux since we have been home. I have to laugh because that poor girl went through the mill and back just to get a regular gtube button placed. So 4 days later we returned home. Even though hospital stays are always rough and we are all sleep deprived and crabby, we had wonderful nurses, great care, and always felt supported in our decisions at American Children's Family Hospital-worth the drive to Madison!

Thankfully this girl will sleep in the car, otherwise it would make for a very long drive!


Lily was not a happy girl during our stay there! Can't blame her. 


And literally-the moment we got her into the truck, she was all smiles. Ready to go home mom and dad!

Lily has been doing very well and we are so grateful for her continued health and sweet personality. She is a joy to be around and we are so thankful its summer so we can get out more and enjoy the nice weather without being worried (so much) about germs!! Thank you for your continued support and prayers. The rest of the summer update will come soon!

Lily sends her love :-)

"My grace is sufficient for you, for my power is made perfect in weakness." 2 Corin 12:7

1 comment:

  1. Thank you for sharing your testimony of faith in this journey with Lily, Jill. How special that you could dedicate her at First Baptist. Praying that you would continue to feel the Father's strength each day.